The Quilt I Wear

Every morning, after I throw my blankets off and crawl out of bed, I pick up a quilt at the foot of my bed, wrap it around my shoulders, and weigh myself down day after day. After a year of dragging this quilt around every where I go, it is starting to look a little worn and a few places have become threadbare. The weight makes me feel exhausted (mentally, physically, emotionally, & spiritually). It's not the prettiest quilt, by anyone's definition, but it is mine and I just can't seem to leave it at the foot of my bed where it belongs.

It's my Guilt Quilt.

My quilt is made up of everything I feel insecure about and all the things I feel I don't do well enough. Every square is another piece of my guilty conscience (justifiable or not).

Top 24 Guilt Quilt Squares

1. I don't spend enough time doing therapy with Rae, I don't make her work as much as she should, and I cave in to her will on a regular basis. 
2. I'm not being as proactive as I should in finding help/assistance for Rae.
3. I don't keep my home clean enough. (UGH...chores!!!)
4. I don't keep my yard trimmed/cut. (Double UGH...more chores!!!)
5. I don't bake/cook as often as I think I should.
6. I don't get the laundry done. (if I do manage to wash everything it will lay on my dining room table for a few days before I put it all away).
7. My husband and I don't spend enough time together without all the distractions of life (Rae, emotions, "stuff") getting in the way. (this is a doozie and often leaves me feeling lonely)
8. I can't really return "favors" or do things for the people I care for & love.
9. I don't call my family/friends often enough to see how they are doing.
10. I don't do anything with my photography website or photography in general.
11. I don't make all of Rae's food. (seriously I'm doing the best I can)
12. We don't get enough sleep...I constantly toss and turn (the sand man needs to give me a double dose!) and my husband snores so I'm always shaking him to make it stop.
13. I'm angry, sad, resentful, mean, depressed, exhausted, selfish, crazed, mad, nit-picky, lazy, undisciplined...okay this list can go on forever.
14. I'm not as neighborly as I want to be or think I should be.
15. I don't exercise and I don't eat well. (Oooo....Taco Bell Thursday!)
16. I did this to my daughter because it is likely a genetic thing and that comes from us.
17. She doesn't walk, crawl, or roll over because I don't work with her enough.
18. She doesn't talk/sign/communicate because I don't work with her enough.
19. I should have caught the seizures sooner. (Why oh WHY didn't I see it sooner???)
20. I should have noticed there was a problem sooner than five months. (Yes, I was a new mom, but I should have known!)
21. I get frustrated with Rae. (every parents struggle)
22. I have to make decisions about who gets medical treatment based on finances...I really need to have my knee x-rayed, but I can wait because we have to have another MRI that has to be done for Rae and it's more important. (yes, I know that I need to take care of myself so I can take care of her and I promise I'll get to it...eventually)
23. I really shouldn't yell so much when I'm upset...at least I don't hit.
24. I never finish ANYTHING! I have so many little projects just sitting in piles that I could open my own craft store. (okay maybe I'm exaggerating a little, but I really need to finish something)

Now that I've talked about the guilt that has been sewn together to make one giant, heavy, burden that I carry around all day, I'm going to share the beautiful aspects of my quilt and the lessons it has been teaching me. These quilt squares are the things I believe I'm doing right. (the list probably isn't as long as my guilt list)

Top 10 Positive Quilt Squares

1. I love, Love, LOVE my daughter!!! She is my joy, my passion, and my purpose.
2. I try to show my husband that he is as important as Rae and that I love him too (I don't always succeed, but I try). It's easy to lose sight of the people around you when you're struggling with something or to take the frustration out on them.
3. I keep all of Rae's medical "stuff" in a fairly well organized binder (it's the only organized thing in my house). This one little show of organization makes bills, receipts (very important), appointments, insurance info, doctor contact info, and programs easier to find when I need them and offers me some peace.
4. I research what I believe may help Rae, her doctors, or us in helping her make further progress or figure out what is causing the problem. I have learned to limit this research by declaring computer free/doctor free days. This allows me to focus on the ever growing list of things I haven't gotten around to doing. I feel a greater sense of accomplishment knowing I finished something...even if it was simply dusting the living room, mowing the grass, or just playing with Rae.
5. I am learning to ask for help (that is never easy for the person who is used to being the helper). When it comes to something I need for Rae I am going to pull every string and ask for any assistance we may qualify for (which isn't much right now). I will have no shame when it concerns our daughter's needs.
6. I am making time for myself, for "us," for Rae, and for our friends/family that isn't centered around our current distressing situation (if you haven't started doing this I highly recommend it). Rae spends at least one night a week with her Mimi and G-Boss. This gives us a much needed break and allows us to enjoy a night to ourselves. Thank God for Grandparents!
7. Even though I think I'm not being proactive enough...I am being proactive. I don't have to sit at the computer all day or tie myself to the phone in order to get anywhere. I am trying to keep it simple and focus on one task at a time.
8. I allow myself to feel the emotions that present themselves. I don't wallow in them. I acknowledge they are there and then I work to move forward. Yes, some will circle back around, but I'll deal with them when they get here.
9. Some days are better then others and I'm learning to seek out the good things, not the bad.
10. Even though it is frustrating to no end, I have NO control over this situation and I realize that I have NO control. We will have to roll with the punches and have faith. (thanks for all the encouragement Maria, you are one of many prayer warriors that keeps me grounded)

It's always been easier to see the bad things in life, the things we do wrong, and the shortcomings we see in ourselves that other probably don't see. They hold us back and keep us from becoming the people we want to be. I challenge everyone that reads this to make an effort to find the positive things, no matter what the struggle is, seek out the things you are doing right. You'll be surprised what you find out about yourself. I always knew I was strong and in my weakest moments, when I feel like I can't take anymore, strength to rise up and push forward always seems to find me.

"Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong." 2 Cor. 12:10

Venting and a Hot Shower

Sometimes I am not a well adjusted Mom. I have been known, on occasion, to join Rae during one of her screaming fits or cry while I hold her when there seems to be no end to her tears. It stems from a deep seeded frustration over not being able to figure out what she wants or needs. Sometimes it feels like she is doing it just to throw a wrench in the cogs (which is silly to feel). It sucks!

I am sure most parents out there can relate to this overwhelming sense of agitation and helplessness when faced with an unconsolable child, but there has to be a better way to deal with it than joining in Rae's temporary madness. Lately, it has been happening in the morning during breakfast and again an hour later.

Currently I have four options (not in any particular order after 1):

1. Run through the check list (clean diaper, hunger, thirst, pain, gas, temperature, etc...). I always do this first in hopes that I can nip the fit in the bud.
2. Lose my cool and screech along with her singing a tune no one wants to hear.
3. Place Rae in her crib, shut the screen door, and seek refuge in the peace of a hot shower.
4. Open up the waterworks and have a good crying session.

I feel horribly guilty when I opt for the second and third choices.

Once the checklist has been exhausted and the fit is still moving ahead at full steam I continue down the list and decide on the next plan of attack.

Screeching like a bird with her is counter productive for both of us. It doesn't make the frustration stop nor does it truly offer any sense of relief...only more frustration and guilt over screeching like a mad woman. So, now I am trying to curb this ill advised, ineffective behavior and have sense found other options better suited to our needs.

Leaving her to fend for herself and teaching her to "self soothe" can be equally stressing because I want to be there for her. I want to hold her and tell her it will be okay. Wipe the tears from her cheeks and make whatever ails her cease. I want to fix it! But I can't. There are times when it just seems best to let her vent. We all have to vent sometimes and Rae is no different. When all other courses of action have been tried and ended in failure, then it is time to let her scream it out. Eventually, she falls asleep, usually after I hop in the shower, and when she wakes up from her nap all is right in the world again (or at least in our home).

Since I'm a firm believer in the cleansing power of good cry, I don't have a problem joining Rae when she is on a tear bender. Of course these occasions are few and far between because the incessant crying has to go past an acceptable (in my opinion) fifteen or twenty minutes and usually no one else can be around to help alleviate the pressure (Dad or Mimi). Eventually, we both calm down and are able to move forward with our day.

I frequently utilize the third option...letting her vent. There is no sense in my fuse blowing because hers has already blown. After I have exhausted the checklist and if I'm not in need of a cry, I leave her to her own devices. She mumbles, whines, screeches, cries, and cusses me out in her own adorable baby talk fashion. We are working on finding and teaching her different ways to communicate more effectively (sign language), but until then we're going allow her the time to vent and I'm going to take a nice hot shower.

Here's a mealtime fit for your viewing and listening pleasure...

Doing "MORE"

So, part of Rae's therapy includes encouraging her to use sign in order to communicate what she wants instead of screeching at the top of her lungs. While this is something that I truly desire to happen, because honestly who likes having their baby yell at them, I become equally frustrated with the idea of becoming Pavlov.

"Rae...Mmmmm....Mmmmm...More?" as I tap my fingers together.

Sometimes she smiles showing me the remnants of her last bite and other times she sits there, staring at me, and after a few seconds starts to screech. So, I try again...

"Rae...Mmmm...Mmmm...More?" promptly followed with a bite of food in hopes it will reinforce what "more" means.

Occasionally, this is met with a modicum of success and Rae will tap her left hand on her tummy or tray (not always consistent, nor the same gesture). Of course this is immediately reinforced with food and me exclaiming, "Yea! You showed me "more!" You're doing such a good job!" As you can imagine, this repetitive process extends her mealtime and, for example, a simple bowl of oatmeal, which generally takes us about 20 minutes start to finish, can now take in excess of 30 minutes.

Scoop, Sign, "Mmmm...Mmmm...More," Feed, and Repeat

The "more" process can be further complicated with the addition of one more step. Instead of just showing Rae the sign for "more," I intermittently pick her hands up and make the "more" sign for her in hopes that she'll start consistently connecting her hand gesture with "more" food. So, now our mealtime steps go like this:

Scoop. Sign, Make Rae Sign, "Mmmm...Mmmm...More," Feed, and Repeat.

As much as I hate to admit this next part (since it will give people the impression that I am not...da, Da, DA...SUPERMOM!!!), I don't always like going through the "more" process during her mealtimes. Sometimes, I just want to get Rae fed so I can move to the next item on my extensive "to-do" list. I then feel immense guilt over not being Supermom and mentally flog myself for not putting Rae's developmental progress ahead of laundry, dishes, cooking dinner, Rae's physical therapy, or dare I say it...taking a shower!

I know what you may be thinking, "It's only 30 mintues. I don't see the big deal." But what you don't know is that the meals are usually followed by the two of us cuddled up in our La-Z-Boy recliner with a bottle of water or milk and trying to encourage Rae to drink more than 1 or 2 ounces at a time. The Hypotonia has made the transition from breast to bottle much more difficult because her muscles have to work harder to make the sucking motion required. For awhile I was trying to encourage her to drink in her high chair and hold the bottler herself. But, that was too much to ask her to attempt given her developmental delays. Our physical therapist, Anna, suggested I hold her so Rae would only have the physical demand of sucking from the bottle and sorta holding it to her mouth.

It worked!!! 

Before this suggestion I was worried about dehydration, but now she will take a bottle and chew/suck it like there is no tomorrow. She has gotten better at holding it, but still needs my support. So, after a meal we sit for another 15 to 20 minutes. These little routines start adding up, chipping away out our day, and before I know it we are starting the entire process over again. Figuring three meals a day, at least four attempts with a bottle, a snack and at least one nursing session...I estimate I spend about three hours of every day sitting in a chair feeding Rae. As a result, I believe I am entitled to not "Doing MORE" every once in awhile.